Voices Across America

PANDAS: ultra rare diagnosis and the journey after

Sadie

State: Massachusetts
Congressional District: MA03

Diseases

Genetic Disease, Immune Disease, Mental Health, Neurological Disease, Rare Disease

Issues and Challenges

Sadie has encountered: Access to Expert Providers, Insurance Issues, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Disability, Gaslighting, Invisible Illness

My Story

One night, 5 year-old Sadie went to bed completely normal and woke up in the morning a totally different child - anxiety riddled, critically ill, on-the-spectrum, and immunocompromised. That was me.

My parents ferociously fought and advocated for me (thank you mom and dad!) and years later we finally got the diagnosis: P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). My family learned that when I had contracted strep - totally normal for a child, right? - that in this rare case, the strep traveled to my brain and launched an attack causing permanent damage. This resulted in many mental health issues including ADHD, OCD, Tourette's/tics, depression, anxiety, dyslexia, dyscalculia, issues reading social cues, insomnia, suicidal thoughts, and being put on the autism spectrum.

Some of these neurodivergent qualities plague me to this day, but I've worked hard to thrive in this life with them and to eliminate others. Now an adult, I'm considered very high functioning and am a very vocal advocate for PANDAS awareness. As one of the very first cohorts, I participated in clinical trials and struggled with the lack of medical knowledge and acceptance by the medical community. Over the past two decades, amazing medical strides have been made in identifying and treating children with PANDAS - but what about the PANDAS that grew up into adults? There's VERY little research being conducted on PANDAS adults so the future struggles with this disease are unknown - well, that's terrifying…

Although I’d had random symptoms pop up over my teenage and college years, doctors simply swept them under the mysterious “PANDAS” rug with no solutions nor treatment plans. Then in my mid-20s, my symptoms became severe as I was having aggressive soft tissue swelling, violent rashes, a laundry list of seeming unrelated allergies, non-epileptic seizures, violent limb tremors, sleep attacks, severe pain, brain fog, and then I lost the ability to walk. Once again after years of me and my family advocating for and seeing all kinds of doctors, I was diagnosed with a string of other chronic illnesses: Idiopathic Hereditary Angioedema (HAE) type 3, Functional Neurological Disorder (FND), Idiopathic Hypersomnia (IH), and more recently have been diagnosed with Hereditary Alpha Tryptesemia (HAT). Almost all rare and without any cures, I’ve been on quite the journey of trying all kinds of treatment plans - from virtual reality pain management to neuro-rehab PT to CBT/DBT therapies to injectable biologics and more - some more successful than others.

Despite my whirlwind of a medical journey, I’ve been able to accomplish great things that little girl Sadie would have never thought possible and all of it is because of my wonderful support system (who I can’t thank enough). I got my BA in Mathematical sciences from Worcester Polytechnic Institute, moved out of state to live on my own, worked as a cryptanalyst for the National Security Agency (NSA), won numerous awards for my cryptologic efforts, relearned how to walk and take more control over my life, became a full-time courseware engineer at the SANS Institute (a cybersecurity training company that I still work for to this day), continue to share my story by public speaking about and advocating for chronic illness and neurodiversity in the workplace, and contribute to my cyber research areas of passion.

At this very moment, I’m currently in a vortex of unexplained and debilitating symptoms and am seeing every kind of specialist to try to get some answers so I can get back to being my chronic boss girl self. I’m riding the struggle bus like a town parade float but I am lucky to still be able to work full-time doing what I love, I strive to find pockets of joy each and every day, and I am grateful to be in good company here in the Patients Rising Family.

My Motivation and Inspiration

My main motivation is to share my story as authentically and as widespread as I can in the hopes that (1) it may help other chronically ill/neurodivergent/rare disease/disabled folks feel seen and/or hopeful for their future (2) spur more conversations around these rare diseases and their effect on human lives (and hopefully these chats lead to actions and cures). While our health journeys can be difficult and all consuming, we still have a lot to celebrate and offer this world which is why I’m passionate about chronic illness and neurodiversity in the workplace. I strive to be a “boss woman with chronic illness X” idol that I wish I had to look up to when first diagnosed. Someone who embraces their successes while acknowledging the hardships they went through to get there and that show themselves grace as they continue to battle chronic illness.

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